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Some words of encouragement from a community member

Mon, 11/25/2013 - 10:12 — matt

Someone would like to share some anonymous words of encouragement. Thanks, anonymous! If you'd like to share something, you can email me at matt@eatef.org, or send a private facebook message to EA/TEF Family Support Connection.

"My spouse, born in the early 1980s, was born with a TEF. He was born as a third trimester preemie. By luck alone he had a NICU nurse attend his delivery, and she noticed excess amniotic fluid and some other signs of TEF. She told my mother in law not to nurse him, and went off to grab a doctor.

Surgery was performed within the first few days of life. He didn't do great on the operating table, but pulled through. In his early life, with all his scar tissue, the heimlich maneuver became a common household occurrence. His dad would whisk him away to the other room so that his mom wouldn't notice that he was choking again. Eventually he grew out of this, and no one loves food more than him now.

He has several children, none of whom inherited the defect. He's a happy, relatively healthy adult. We joke about his second belly button (from his feeding tube) and talk about how he gained his other scars on his belly and ribs (sword fighting ninjas), with places where a tube was put into his lungs "bullet holes" from a fight he'd prefer not to recall in mixed company. Besides an overactive imagination, his life is relatively normal.

He has scaring in his lungs, can't be around smoke for too long, prefers life in a hard wood (rather than carpeted) home, and about once or twice a year a cold goes into his lungs and causes issues. He keeps up with his pulminologist and takes maintenance drugs, and that helps.

He doesn't know any differently, though. And as his spouse, I learned more about the life-saving surgery and his tendency to illnesses only a ways into our dating relationship. I'd known his story was a hard one, but he had been basically just a normal guy all the years I'd known him.

His mom home schooled him until second grade, and once he started school, he fought many battles with pneumonia. This taught him to love reading, and also taught him to take an impending illness seriously and get some rest.

He has his doctorate now. He's well published in his field and very successful at his job.

At the beginning of a journey like this, it's hard to see the road before you. I wanted to pass a bit of hope on to other parents."